MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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JerryfromFauq's picture
Replies 1
Last reply 12/18/2014 - 1:10pm
Replies by: JerryfromFauq

My First Christmas in Heaven

This has been posted almost every year that I have been on the MPIP. I came onboard in 2007 and is meant as solace for the Christians whose loved ones have died n the past year..

I'm me, not a statistic. Praying to not be one for years yet.

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My husband had scans this week. 7 years Stage IV, 5 1/2 years NED. We found out he had Stage III melanoma when our two boys were 3  and 1 years old. Then a year later it was found in his lungs and intestine.  It has not been an easy road but hopefully sending this note will give others hope.

This has been the best Christmas news for us, no gift could compare. I don't visit this site as much as I used to but the people and this site helped us so much when my husband was first diagnosed.

Wishing everyone a wonderful Holiday!

Rebecca

 

Believe

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hbecker's picture
Replies 1
Last reply 12/18/2014 - 12:07pm
Replies by: jbronicki

We went to Johns Hopkins this week for my husband's annual check-up as part of a follow-up study after he participated in a GVAX melanoma vaccine trial. The scan reports all say "no evidence of metastatic disease," so we are celebrating 2 1/2 years post-WLE! This post is an edited version of the one I put on my blog to keep our family and friends up to date.

Since there were no medical issues to discuss, we used some of our time with Dr. Lipson to get an update on melanoma research. He said the most prominent news is the ongoing developments in combination immune therapies, in which researchers are using antibodies that activate the immune system in various combinations. The research shows that the therapies are effective in a number of cancers, including kidney cancer, breast cancer, lung cancer and lymphoma as well as melanoma.

He wasn’t talking about TIL therapy, which I’m pretty sure is likely to be very expensive if they are able to bring it to market – so expensive that sometimes I think of it as the monster that could eat all our money someday. Some researchers are working with therapies that activate the immune system without taking cells out of the body. We can hope that someday this will lead to effective therapies that can be commercialized without the prospect of either being available only to very wealthy patients or bankrupting the rest of us.

Another positive thing about the immune therapy research is that some of the studies include patients with Stage 3 disease. Generally, reseasrchers don't want to study therapies in patients with completely resected melanomas because without a tumor to shrink, it’s hard to tell whether it’s working. As Dr. Lipson said, “in people who don’t have any evidence of disease, you wait … and you wait … and at some point you have to say, ‘Well, this did it.’ [Or not.] Even if you have two groups of people with a thousand patients in each group and you wait five years, it’s a long time for a trial.”

Five years, trial or no, is a long time to wait. And as Dr. Lipson explained, the risk tapers off during that time. It’s not as though you are fresh out of surgery, and you know that the risk of recurrence is highest in the first five years, and then you hit the five-year mark and the risk gone. So what does it mean to be at the half-way point – two and a half years with no evidence of disease? Will it be different in June, with the next set of scans, at the three-year mark?

I think not. Or if so, only to the extent that we’ve learned even better how to live with the uncertainty of being a melanoma survivor. Life goes on, and as long as it does we’ll continue to make the most of each day.

It's a lesson I learned right here on the MPIP. Thanks so much to all of you who have helped!

Hazel

 

blogging at www.hazelbecker.com

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Jsneathen21's picture
Replies 5
Last reply 12/18/2014 - 9:56am

I just learned today I have to have the sentinel node biopsy done... Can any body give me advice on this? As far as what are the side effects? How long is the stay? Or is it outpatient? I would like to know how it's effveted your treatment or outcome thank you so much

 

diagnosed with atypical spitzoid melanoma 

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Thankful_Heart's picture
Replies 2
Last reply 12/18/2014 - 2:20pm
Replies by: arthurjedi007, Janner

have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } - At Least they Found this in time' -  thoughts anyone?  

 

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have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } - At Least they Found this in time' -  thoughts anyone?  

 

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have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } - At Least they Found this in time' -  thoughts anyone?  

 

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susan-scalp MM 2014's picture
Replies 3
Last reply 12/18/2014 - 11:31am
Replies by: susan-scalp MM 2014, Janner, Anonymous

Hi everyone.  I am new here.  Diagnosed with Stage 1B Malignant Melanoma on top of scalp in June this year. Due to complications I cannot have surgery under general anesthesia. My question is can an ultrasound detect an enlarged lymph node I may have in my neck and if so can it be biopsied accurately and treated without surgery?

Susan

It is well with my soul!

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If you have had carpal tunnel surgery and have lymphedema in that limb what were your results as far as complications go.  I know my husband was told not to so much as have a blood pressure cuff put on that arm so am wondering on the wiseness of doing this surgery.  The orthopedic Dr. said if he doesn't he will continue to lose strength and dexterity in that hand.  He has Stage IIIB melanoma and has been NED since treatment ended at the end of 2010.  He will at the same time have surgery on that elbow to unpinch the ulnar nerve that is also causing loss of sensation in his left hand.  They said it is severe on both hands so needs the surgery done on both.  We are only concerned about the arm with lymphedema.  Any response on results or if this surgery is advised  would be very helpful.    He had 5 high dose radiation treatments to his underarm when the melanoma returned to the lymphnodes and then a year treatment with Leukine.  Seems to have done well since until this.  Thanks for your help. 

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Anonymous's picture
Replies 2
Last reply 12/18/2014 - 12:24pm
Replies by: odonoghue80, rick1981

A short video, like ten minutes or so packed with hope:

 http://melanomainternational.org/events-webinar/patient-experience-video

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/18/2014 - 8:25am
Replies by: Anonymous, Marianne quinn, Lil0909

I seriously made my new oncologist upset when they posted my CT results in my account before I had my appt to go over the results. I cancelled my appt based upon the stable results. I am IIIB positive ulceration, mitosis 18, one node positive. 18 mo out from dx. The new oncologist called on phone to blast me and said I would now go to chest X-rays only?! Is that the usual progression of watch and wait?

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/18/2014 - 11:13am
Replies by: Anonymous, Janner

Can anyone help me understand the difference between Clark's level and Breslow depth?  Aren't they basically measuring the same thing, i.e. depth or thickness of lesion? Is the significance of Clark's level based on the thickness of the layers of skin in different areas of the body?  I have read that Clark's level is not really a good prognostic indicator but Breslow depth is, but if they are measuring the same thing, the thickness of the melanoma and how deeply it penetrates the skin layers, how can one be helpful and the other not?

Insight?

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Lauri England's picture
Replies 5
Last reply 12/18/2014 - 9:03am
Replies by: _Paul_, BrianP, jbronicki, BP, SABKLYN

I have been NED for 4 and a half years. On Thanksgiving I noticed a bebe size lump on left side of my neck.   I gave it a week and it doubled in size.  I went to my family doctor and she refered me right on to my oncologist.  I had a CT scan December 9th 2014 and got results back December 16th.  I have a 4 inch mass in the upper part of my left lung and a 10mm size mass right behind my liver.  Doctor right now is not sure of this is spread of Melanoma or another type of cancer.  Next week I will be going in for PET scan and diopsy to confirm.  Not sure what is going to happen next.  Very scared once again.  I beat this once and I feel in my heart I can do it again...

Don't sweat the small stuff. There are bigger fish to fry!

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ashlee12's picture
Replies 1
Last reply 12/18/2014 - 2:18am
Replies by: Janner

Hey everyone 

 

I've posted on here anot being diagnosed with melanoma about 2 months ago... I'm 22 and it wasn't even stage 0 yet which is great but I do have some questions?

 

now so far I have had 4 atypical moles removed one severe 2 mildly and 1 moderate. Now I know I have a greater risk of developing another melanoma which scares me... And now I think all my miles are weird hahha and I've kinda become obsessed with them 

 

Now some questions I have 

how likely is it that if I'm going to regular check ups that the doctor will miss something and I'll get a higher stage melanoma?

 

now I have read people get melanoma removed and they are okay and it comes back and then they have stage 4 melanoma .. How does that happen? Is it doctors fault ? 

 

 

And and last question is they removed my melanoma with surgery .. I got local anesthetic and she went in with some small pen like thing and as she was going smoke was coming from where she was working.. Is this a good way to remove moles???

 

 

 

thanks!

 

 

 

 

 

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Ashley's picture
Replies 5
Last reply 12/17/2014 - 4:10pm
Replies by: sweetaugust, BrianP, Anonymous

My dad is on a trial with PD-1 and his first set of scans showed 20% decrease in tumors.  We just got the second set of scans and it showed 9.5% more shrinkage from baseline. Could those who had positive responses to Pd-1 share how quickly it worked?  Is this bad that second scans didn't have as good of a response?

Thanks,

Ashley

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